Making the case for the right to life of every innocent, from Lake County, Illinois

Friday, April 8, 2016

Denial of Treatment

The Faces & Facts behind Simon’s Law: Megan

By Ann and Frank BarnesEditor’s note from Kathy Ostrowski, Kansans for Life legislative
director: Simon’s Law, Kansas Senate Bill 437, would require parent
permission before a minor is coded as a Do Not Resuscitate (DNR) and
would also require hospitals and other medical facilities, upon request,
to disclose any existent “futility” policies.This is the latest in a series from Kansans for Life that looks
at the real lives affected when Do Not Resuscitate (DNR) orders are
unilaterally issued by physicians. In the following, Ann and Frank
Barnes share the details of how this practice ended the life of their
precious daughter, Megan.

Megan Barnes, 1985-2004

Both our beloved daughter, Megan, and Simon Crosier– for whom the
Simon’s Law legislation is named– were born with the same rare syndrome
but Megan’s diagnosis was not immediately detected. She was full term
but small, with a ventricular septal defect and a minor lip defect. Such
signs alerted doctors of possible chromosomal problems, so a blood
sample was sent for genetic testing. We were, however, able to bring her
home at a week old.
Megan was over two months old when we heard the words “Trisomy 18”
and the heartbreaking news that these babies fail to thrive and her life
would be brief– up to a year at most. When questioned as to what would
cause her death, the response was a vague, “these babies don’t do well.”
Hospice was suggested, but accepting Hospice care would be accepting
the diagnosis which our hearts were not ready to do.

She was our daughter and loved, perhaps even more so, because of those predictions.
The fear of Megan dying weighed heavily on our hearts until we
stopped waiting for her to die and began finding ways to help her. But
in 1985 there was a lack of information about survivors living with this
syndrome. We felt alone and longed to meet another child like Megan.
Her geneticist gave us a newsletter from the Support Organization for
Trisomy 18, 13 and Related Disorders (SOFT) when she was about 6 months
old. What a life changer! SOFT became both a life-line of information
and a second family, with children like our daughter. SOFT also has a
compassionate medical advisor who has helped families for over three
decades. Because of the tremendous sense of worth given to each child at
the annual SOFT conferences, we attended many, and still do.
I cannot tell you the number of times we said how glad we were to
have Megan. She gave us purpose, and taught us about patience,
perseverance, resilience, unconditional love, and more. She had a sweet
disposition and, like any child, enjoyed attention and praise. Though
she could not talk, she definitely let us know her preferences. All-time
favorites were the Disney video, Beauty and the Beast, a Texas
Instrument toy– replaced more than once, and her 17th birthday party.
She enjoyed music and movement and the activity of physical therapy
sessions.
Megan was content and knew she was loved, and it was obvious that
what she valued most was being with people, especially those who loved
her.
On Christmas Day, at age nineteen, Megan was hospitalized for
virus-caused dehydration, in a pediatric intensive care unit at a major
teaching hospital.
She died four days later.
We were devastated.

Only after her death did we request her hospitalization records and
learned the horrible truth that our wishes for life support intervention
had been overruled by a verbal order from the “attending” physician to
his staff. Megan had been issued a Do Not Resuscitate (DNR) order
without our knowledge or consent.

Had there been a requirement for a parent signature on a life support order in that hospital, this would not have happened.
It added so much more pain to our grief to learn that our daughter
died because we trusted the wrong physician. Instead of providing needed
intervention, he misled us about what was happening, allowed her
condition to decline, and then said there was nothing that could be
done.MEGAN’S LAST GIFT

Our daughter’s end-of-life lesson is about the vulnerability of
parents and their children when the child is hospitalized.
Parent-physician trust requires transparency and respect.
We believe any physician (hospital, medical society or hospital
association) opposed to the parental signature requirement on a life
support order, as proposed in Simon’s Law, has something to hide; and in
some cases wants to control the outcome due to personal views about a
particular disability or illness.

Megan outlived the survival statistics we were given when she was an
infant, and she is not the only one with Trisomy 18 or Trisomy 13 to
have done this as a number of survivors are now young adults! They have
health issues, developmental challenges and a life-limiting disorder,
but most importantly, they are living evidence that it is incorrect to
claim these disorders are universally lethal.
Clearly, the risk of a DO Not Resuscitate (DNR) code being imposed
without parental knowledge or consent is increased for children like
Megan and Simon. And this dire risk also applies for any child who
suffers critical injury or illness.

Megan was a victim of the usurpation of parental rights—will your child be next?
We fully support Simon’s Law to help prevent this injustice from happening to another family.